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普拉德-威利综合征患儿兄弟姐妹的心理调适

Psychological adjustment of siblings of children with Prader-Willi syndrome.

作者信息

Bennett Murphy Laura, Thornton Jane, Thornton Emma

机构信息

Department of Pediatrics, School of Medicine, University of Utah, Salt Lake City, UT, USA.

School of Social Work, Utah State University, Logan, UT, USA.

出版信息

J Intellect Dev Disabil. 2023 Jun;48(2):196-205. doi: 10.3109/13668250.2022.2132630. Epub 2022 Nov 2.

DOI:10.3109/13668250.2022.2132630
PMID:39815905
Abstract

BACKGROUND

Siblings of children with Prader-Willi syndrome (PWS) may be at elevated risk for poor psychological adjustment (Mazaheri, M. M., Rae-Seebach, R. D., Preston, H. E., Schmidt, M., Kountz-Edwards, S., Field, N., Cassidy, S., Packman, Wet al. (2013). The impact of Prader-Willi syndrome on the family's quality of life and caregiving, and the unaffected siblings' psychosocial adjustment. , (9), 861-873. ; O'Neill, L. P., & Murray, L. E. (2016). Anxiety and depression symptomatology in adult siblings of individuals with different developmental disability diagnoses. , , 116-125. ). The current study describes psychological distress and symptoms of post-traumatic stress disorder (PTSD) in non-disabled siblings.

METHOD

Fifty-eight siblings and 86 parents participated.

RESULTS

Parents reported that almost 40% of siblings had psychological symptoms that exceeded clinical cut-off scores; 58.9% of siblings reported symptoms of PTSD that exceeded diagnostic cut-off scores. Symptoms were significantly related to family organisation and control per parent report and negative affect per sibling report.

CONCLUSION

Growing up with a sibling with PWS may challenge adaptive resources of non-disabled siblings, leaving them vulnerable to psychological distress. Those who care for children with PWS are in a unique position to educate families about the potential vulnerability of non-disabled siblings. We encourage routine screening and support for affected family members, especially siblings.

摘要

背景

普拉德-威利综合征(PWS)患儿的兄弟姐妹可能面临心理调适不良的风险增加(马扎赫里,M.M.,雷-西伯奇,R.D.,普雷斯顿,H.E.,施密特,M.,孔茨-爱德华兹,S.,菲尔德,N.,卡西迪,S.,帕克曼,韦特等人(2013年)。普拉德-威利综合征对家庭生活质量和照料的影响,以及未受影响的兄弟姐妹的心理社会调适。,(9),861 - 873;奥尼尔,L.P.,& 默里,L.E.(2016年)。不同发育障碍诊断个体的成年兄弟姐妹中的焦虑和抑郁症状。,,116 - 125)。本研究描述了非残疾兄弟姐妹的心理困扰和创伤后应激障碍(PTSD)症状。

方法

58名兄弟姐妹和86名父母参与了研究。

结果

父母报告称,近40%的兄弟姐妹有超过临床临界分数的心理症状;58.9%的兄弟姐妹报告有超过诊断临界分数的PTSD症状。根据父母报告,症状与家庭组织和控制显著相关,根据兄弟姐妹报告,症状与消极情绪显著相关。

结论

与患有PWS的兄弟姐妹一起成长可能会挑战非残疾兄弟姐妹的适应资源,使他们容易出现心理困扰。照料PWS患儿的人处于一个独特的位置,可以向家庭宣传非残疾兄弟姐妹可能存在的脆弱性。我们鼓励对受影响的家庭成员,尤其是兄弟姐妹进行常规筛查和提供支持。

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引用本文的文献

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Anxiety, Depression and Stress in Parents and Siblings of People Who Have Prader-Willi Syndrome: Morbidity Prevalence and Mitigating Factors.普拉德-威利综合征患者父母及兄弟姐妹的焦虑、抑郁和压力:发病率及缓解因素
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2
Psychosocial Functioning for Preschool-Aged Siblings of Children With Chronic Disorders: A Scoping Review.患有慢性疾病儿童的学龄前兄弟姐妹的心理社会功能:一项范围综述。
Child Care Health Dev. 2025 Mar;51(2):e70039. doi: 10.1111/cch.70039.